Kendall’s CDH Story
I found out that at 17 weeks my daughter, Kendall, had a diaphragmatic hernia. I'd never heard of that before and when you look it up online the statistics of survival aren't great. That night after I found out, I was lost on what to do. I researched and found different Children’s Hospitals but I still didn't know what to do. I joined a Facebook group called, Congenital Diaphragmatic Hernia Support Group by Tiny Hero. One post about Kendall's diagnosis and my phone was blowing up with support! Multiple people mentioned Dr. Kays team at Johns Hopkins All Children's Hospital. We live in Ft. Myers so this was a blessing! It's only a two-hour drive from my house.
I had my appointment there at 24 weeks pregnant. We found out Kendall's diagnosis was very severe. All of her intestines were up including 30% of her liver. Dr. Kays gave us a 90-95% survival with a 50% chance of ECMO. After meeting his whole team, I knew we were in the best place for Kendall to have the best chance of survival. I gave birth to Kendall on February 20th. She was 5 lb 14 oz. The first day of survival for Kendall was very difficult. She had a hard time adjusting and almost went on ECMO. However, she pulled through after the first 12 hours and exceeded everyone's expectations! Kendall had her repair 4 days after birth. She had a large C defect and only 10% of her left diaphragm. Dr. Kays said he was surprised at how much lung she had for that severity. Truly a miracle!
The next couple weeks Kendall did amazing! She does have some severe reflux but that's to be expected. She got discharged in 30 days! Kendall is now a little over 3 months old. She is on oxygen only for sleeping and off when she's awake. She is doing amazingly cognitively and physically! I don't think she'd be where she is without the care from Dr. Kays' team and without the Facebook page from Tiny Hero, where I got their recommendation. She really is a fighter and I can tell that in her personality already. I know she will do amazing things in her life. I love my tiny warrior.
